KUALA LUMPUR – Athif Fahri Muhammad Farhan, a one-year-old baby in Kuantan, Pahang, has been diagnosed with type one spinal muscular atrophy (SMA), a genetic disease. His family is desperately seeking donations for his treatment worth RM9.72 million.
Nur Azizah Zamri, who has two other children, confirmed to Getaran, the Malay-language sister portal of The Vibes, that her youngest child has been suffering from the rare disorder since the day after he was born on March 3 last year.
Azizah, a nurse, said that she did not know about the disease even though she had been working in the health sector for several years.
She said that she had to search the internet to find out more about the disease.
“Atif was born in perfect condition. Even during the nine months in the womb, no problems or abnormal symptoms were detected.
“However, as soon as he was born, doctors detected something wrong with Athif before he was diagnosed with type one SMA,” she said.
Based on the information she gave, Athif’s life expectancy may only be for two years if he does not get proper treatment. However, the family cannot afford the cost of her son’s treatment with her income as a nurse, while her husband, Farhan, is a clerk in a private company.
“The only available treatment is a Zolgensma injection, which is genetic therapy that costs RM9.72 million, or Risdiplam, a daily dosage worth RM40,400 that can last for 50 days.
“We have no other choice, so we chose the temporary treatment by giving Atif the Risdiplam dosage while raising enough funds to get the Zolgensma injection.
“Atif has a chance to grow up and live a good life like other babies. With the help of the public, God willing, we will be able to do it,” she added.
Azizah, who has been on unpaid leave for almost a year to care for her youngest child, said that since using Risdiplam, Athif has shown good progress with positive resistance to the disease.
SMA is a genetic disease that causes progressive muscle weakness, involving nerve cells in the spinal cord.
The disease is one of the main causes of death in newborns. Without proper treatment, it can result in the patient dying after a few years.
Athif has been suffering from a weakened respiratory system and has needed respiratory support all the time since he was three months old.
Azizah said that her son only has time until March next year to raise funds to get the Zolgensma treatment.
“We really need help from all parties, whether individuals, private parties, or the government to provide enough funds,” she said.
The crowdfund established via Give.asia specifically to help Athif get the Zolgensma treatment has only managed to get RM256,762 so far.
The public is welcome to donate to Athif via the Give.asia public fund campaign here. – The Vibes, March 24, 2023
